﻿﻿Worldwide Lyme Awareness Project - Australia﻿﻿

Whilst much of Australia's information for the Inaugural year will also be recorded on the Worldwide Lyme Borreliosis Association (along with the other 27 countries), this website will remain as a permanent record of Australia's participation in the 2013 Inaugural Worldwide Lyme Protest.

The Worldwide Lyme Project - Australia Website was developed and maintained by Karen Smith (Australia's International Representative / National Co-Ordinator). While it was originally envisaged to be a website that would serve as an ongoing record of Australia's participation in the WWLP, this situation changed with a couple of developments: Karen co-founding the Worldwide Lyme Borreliosis Association (where all country information/participation is now recorded), and the Lyme Disease Association of Australia taking on a more active role in the organising and planning of the WWLP - Australia events in 2014. Whilst some information regarding the 2014 WWLP is recorded (eg: Worldwide date change, Australia's campaign name change, Poster information) on the website, the majority of the Information regarding Australia's participation in the WWLP for 2014 can be seen at either the Lyme Disease Association of Australia, or the Worldwide Lyme Borreliosis Association Websites. **********************************************************

December 1st 2014: Please note: While the International Committee for the Worldwide Lyme Protest disbanded* late 2014 this website will remain as a permanent record of the project.

*In 2014 the number of countries participating in the WWLP dropped from 28 (Inaugural year) to 21. Communication between the country representatives was limited throughout 2014, and the International Representative group for the Worldwide Lyme Protest disbanded in late 2014.

Inaugural Worldwide Lyme Protest

The World Unites For LymeOn the 10th and 11th of May 2013, over 50 Lyme disease/borreliosis protests and awareness events took place in 28 countries around the world - including Australia - to highlight Lyme and other tick-borne infections as serious diseases that require the urgent attention of governments and the medical community.

Australia Joins the Cause

Australia was signed up for participation in the Worldwide Lyme Protest by Lyme patient and advocate Karen Smith on the 3rd of November 2012, making it the 8th country to join the event. After congratulating Australia on its involvement, fellow Lyme patient Janice Foster’s enthusiasm was quickly embraced, and she was asked to join Karen as a national co-ordinator.

Around Australia many people volunteered their time for this cause, resulting in over a dozen large events planned in six states, as well as numerous smaller awareness events. In February 2013, Sharon Whiteman, President of the Lyme Disease Association of Australia (LDAA) was approached for involvement. The LDAA committee confirmed support of the WWLP-Australia events in March 2013 and provided invaluable assistance through activity such as the co-creation and funding of Lyme awareness pamphlets and posters for the events. Why Australia is Participating

We, the Lyme community of Australia, are involved in the Worldwide Lyme Protest to highlight the fact that further research is urgently required.

Since the early 80’s there have been thousands of suspected clinical cases of Lyme disease in Australia, and many people who have never left the country are battling Lyme. These sick people – and those who have contracted the illness overseas – are regularly denied accurate diagnostic measures, adequate treatment, and support from the healthcare sector, who are largely reliant on government guidance. It is time for the governments to stop relying on ONE study that is nearly twenty years old to continue denying the existence of Lyme disease in Australia. It is time to stop ignoring all the other research that does indicate that Lyme is in Australia. It is well and truly time to recognise Lyme. Please join us to say, enough is enough!

WWLP - Why it is Worldwide

Lyme: The Stealth EpidemicThe current situation - insufficient awareness by the broader medical community of the clinical diagnostic signs, a lack of up to date research on adequate testing methods and appropriate treatment for both acute and chronic Lyme – is unfortunately one that is faced by Lyme patients around the globe. Activism efforts for recognition and awareness have been ongoing for many years in a number of countries. That people from all these countries would join together to present a united International front seemed the next logical step.This occurred on the 31st of October, 2012, when the ‘parent’ “Worldwide Lyme Protest” Facebook page was established by Swedish activist and Lyme patient, Charlotte Therese Björnström, to gauge interest from other countries. The response was immediate, and by April 2013, 28 countries had pledged involvement.This commitment, gained from people who are separated by thousands of kilometres, but united by their chronic illness, is testament to the passion of the Lyme community in gaining recognition for their illness.

Round-Up of Australia's involvement in the Inaugural Worldwide Lyme Protest

By Karen Smith (Australia's International Rep/National Co-ordinator)

The Worldwide Lyme Awareness Protest (WWLAP) began as a Worldwide Grass Roots campaign with many advocates all over the world joining together to bring as much attention to the inadequacies surrounding Lyme diagnosis and treatment as possible. When I registered Australia's interest and signed up as Australia's International Representative in participating in the Worldwide event in November 2012 I honestly had no idea how quickly this event would grow, both nationally and internationally. Almost immediately on starting Australia's WWLAP campaign on Facebook, Janice Foster's comments on the event and my prior knowledge of her keen interest in raising awareness about the lack of acknowledgement of the existence of Lyme in Australia saw me asking her to join me to work together on the National co-ordination of the event. Thankfully she said yes. I say thankfully, as Janice's input and help with regards to numerous aspects of Australia's participation in this worldwide campaign was nothing short of amazing.

As the Worldwide Lyme Protest was a developing event , no-one could have possibly imagined how large it would grow in its inaugural year. Both myself and Janice were grateful then, when we approached the Lyme Disease Association of Australia (LDAA), in February 2013 they agreed to come on board to sponsor some of the costs incurred by the organisers of the events being held all around Australia. Not only did LDAA participate through sponsoring some of the associated event costs (posters, brochures, liability insurance for some of the larger events and the buildings lighting up green), Sharon Whiteman (President of LDAA) also joined the national co-ordination team / committee which until then had consisted of the large total of Janice and I. We were both very thankful for Sharon's awesome input and to add her to our crazy team, more formally called the national co-ordination committee.

The success of Australia's campaign would not have been possible without the numerous Australian Lyme patients and advocates who also embraced this campaign with enthusiasm and organised events around Australia and also helped out in many various ways with this campaign which included:* Over a dozen events held Australia wide * Landmarks and Buildings (17) around Australia lighting up green for Lyme Awareness* The moving National Patient awareness 'highlights' video which received over 3,000 views, and the pictures submitted for the video, printed and submitted to the Chief Medical Officer of Australia* Emily Madden's song "Right These Wrongs", written for the patient videos (and used in many other countries, as well as sung at numerous events around Australia) receiving recognition from the makers of the Lyme documentary, Under Our Skin*Numerous media articles on Lyme disease

On behalf of Australia's Worldwide Lyme Awareness Protest 2013 "Committee", I extend a huge thank you to all those involved behind the scenes, and to the organisers of the Australian events listed opposite. Their efforts , and personal costs, both in time and money, are greatly appreciated by all. Australia's efforts in the Worldwide campaign were phenomenal and contributed in raising a large amount of awareness about Lyme disease Australia wide. Some of this awareness was evidenced by the large influx of numbers into Australian Lyme patient support groups and patient queries to the Lyme Disease Association of Australia. I would also love to say a huge thank you to all the other countries involved in the Worldwide Lyme Awareness Protest. The number of countries involved with this event meant that there was a great deal of media interest across the world due to sheer size of this campaign. The people I got to "meet" and the passion shown by advocates all around the globe to end the ignorance surrounding Lyme and other tick-borne diseases have the strength and determination that I know will go on until the goal is achieved.